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It was a beautiful spring afternoon seventeen years ago when I
was seated on an examination table and the neurologist began to
speak. “You have amyotrophic lateral sclerosis, ALS. You might
have heard it referred to as Lou Gehrig’s disease.” Without
raising my head I asked, “How long?” Void of hesitation, his
reply rang in my head, “Three to five years.” That marked the
beginning of a journey of many changes and challenges.
As I declined into paralysis my dependence on others increased.
I have hired many caregivers in my nearly two decades of
disability, some fantastic, some horrible. Unfortunately, the
horrible caregivers seem to leave the lasting impressions, but
when your total existence depends on others and you are in need
of a caregiver, the memory becomes short.
During the ‘90s, I became totally paralyzed, needed to use a
ventilator fulltime, and lost the ability to eat and speak.
Living on a fixed income with increasing personal care needs
made it more and more difficult to afford qualified caregivers.
According to the government, I am wealthy and do not qualify for
additional financial assistance, so all of my caregiver expense
is out of pocket. I struggle to make ends meet, a catch-22 all
too familiar to many Americans with a disability.
In my efforts to hire and afford caregivers capable of my care
requirements, I have used every medium imaginable to locate
qualified candidates: classified newspaper ads, personal
referrals, nanny services, agencies, mailbox fliers, articles,
church bulletins, word of mouth, etc. Some methods have been
more successful than others, but all have several drawbacks. The
most common problem is the lack of information that can be
easily accessed.
My caregiver of four years was leaving my employ early in 2004
to marry. I began looking for a replacement several months prior
to her departure. I decided to use the Internet thinking it
might be an excellent resource to find home health professionals.
To my disappointment, all I discovered on the Internet were a
few classified-style ads scattered here and there on various
sites. These postings were still lacking the detailed
information needed to save time and make informed decisions to
hire the appropriate candidate.
I have been an entrepreneur since childhood, and my wheels began
turning. I thought if I, as an individual with a disability,
experienced these frustrations, caregivers must wrestle with the
same problems. The idea came to me of creating a platform much
like a singles’ website, but instead for home health
professionals and “patients” in the home setting.
The plans for RespiteMatch.com began taking shape. I developed
profiles that have the capability to be extremely detailed,
containing many variables important to the patient/caregiver
relationship. It is my desire to create one-stop shopping that
will meet all home health needs and that will avoid the common
home health pitfalls both patients and caregivers have endured.
Currently on www.RespiteMatch.com, patients and caregivers can
create detailed profiles with or without photo-graphs (if
provided) as members at no charge. They can add to their
Favorites List, receive email notification when their profile
has been added to another’s Favorites List, and also view their
personal MatchList generated by their requirements.
Subscribers to the RespiteMatch ser-vice ($19.95 for 30 days;
$49.95 for 90 days; some additional fees for searches and surety
bonds) receive all of the member benefits but have access to all
of the contact information contained in the profiles, including
the use of RespiteMatch’s private email and email notification.
Subscribers can search by many criteria in addition to specific
health skills that are required or possessed. Mem-bers can also
search by location with GPS-powered zipcode searches.
Now available for subscribers include background checks, DMV
checks, credit checks, employment verification, professional
license verification, education verification, criminal and civil
records checks, sex offender checks, reference verification,
etc. Soon domestic workers’ surety bonds will be available as
well as home health products.
SIDEBAR
As founder of the National Coalition to Amend the Homebound
Restriction (NCAHB), David Jayne prodded The Centers for
Medicare & Medicaid Services (CMS) into conducting a two-year
demonstration project called Home Health Independence
Demonstration. It began in October 2004 in Massachusetts,
Missouri and Colorado, with a maximum of 15,000 Medicare
beneficiaries (across all three states) eligible to participate.
The project is studying the benefits and costs of allowing
Medicare beneficiaries with severe, chronic conditions to be
deemed homebound – for the purposes of remaining eligible for
home health services – even though they leave home more than
would be allowed under the existing Medicare rules.
The demonstration permits individuals who are eligible to leave
home as often and as long as they like (except to work regularly
in a paid position full-time or part-time outside the home) and
still be considered homebound in order to receive Medicare home
health services.
For more information and to check possible eligibility as a
ventilator user, log on to:
www.cms.hhs.gov/researchers/demos/HHAPac10_8_04.pdf
About the author:
David Jayne is a 17 year survivor of Lou Gehrig's disease. He is
the founder of RespiteMatch.com. David shares his extensive
knowledge of the home health industry and disability rights.
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